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Friday, December 22, 2006

What is Autism -- Part 1

Social Interactions

According to the DSV-IV (Diagnostic and Statistical Manual edition 4) published by the American Psychiatric Association, Autistic Disorder is a disorder consisting of the manifestation of a variety of measureable traits. One of these traits is the "qualitative impairment in social interaction, as manifested by at least two of the following:"

(a) marked impairment in the use of multiple nonverbal vehaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental
level
(c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity.



Overwhelmed yet? I live this stuff every day, and when I first say that I went, "Huh?" But, then I was able to break it down into meaning based in examples. Lets see how this actually works.

"(a) marked impairment in the use of multiple nonverbal vehaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

Willy is the most normal of my three autistics boys. This is ironic, because he was also given the worst prognosis. Lesson #1) Prognosis is not diagnosis: diagnoses are based in scientific fact; prognoses are "educated guesses," with personal bias thrown in. Anyway, Willy talks and socializes. He communicates in a variety of ways. But...and this is a big but...we have to actively teach him about emotions. His emotions, other peoples' emotions, doesn't matter; he just doesn't get it. Not on his own, anyway.

Human beings communicate in a variety of ways. One such way is non-verbal cues, such as facial expression and body language. Many people have heard of Emotional Quotients. Being people smart can get you just as far, if not farther, than being book smart or intelligent. Most people learn these non-verbal cues as they grow up; they soak it up through observation, often without ever being aware they're doing it. They make judgements on the basis of these observations, usually unconsciously. They take it for granted, and they expect others to be skillful as well.

Autistic people are not skillful at it, at least not naturally. They have to consciously learn these same skills of observation and intuition that most people take for granted. It's hard work. It holds them back. And, it's hard for those on the outside of autism to understand why this is such a difficulty for them.

Right now we are teaching Willy about emotions using exaggerated facial expressions (read enlarged emoticons), coaching him with verbal expressions, and other tried-and-true autism therapies. It's difficult to help Willy sort out his emotions, because sometimes we simply do not know what he's feeling. Sometimes it's hard for us to tell whether he's mad or frustrated or sad. But, slowly he's learning to be able to distinguish between them. Eventually, we hope, he'll be able to recognize emotions in other people and respond to those emotions appropriately.

"(b) failure to develop peer relationships appropriate to developmental level"

Alex is seven years old. He's had many challenges, some of which are not directly related to (though they are exacerbated by) autism. Alex loves people. Alex is happy. Alex is fun. Yet, he doesn't really have any friends his own age. All of Alex's friends are people who've made the effort to be friends with him, an act he's not yet able to reciprocate. That doesn't mean he doesn't interact with them, or play with them, or anything like that. But, having a friend is different.

Generally speaking, I like people, though admittedly I don't trust them. I have friends who, given due cause, I'd go up to bat for on anything. While I care for the well-being of almost everyone on this planet, all six and a half billion of us (with the notable exception of mass murders, serial killers, rapists & child molesters), there are some people I set apart as "mine." I don't mean that in an owning or possessing sort of way, I simply mean that I associate them as an other who is directly tied to myself. My husband calls this "invisible strings." I would put it this way: I would not be who I am today without these people having touched my life and myself the way they have. These people are friends. They are set apart. They are elevated. They affect in dramatic, long-term fashion. They are friends.

Sadly, Alex does not readily make such distinctions. I am distinct. My husband is distinct. His brothers are distinct. His grandmother (my mom) is distinct. A few of his therapists and teachers are distinct. Other than that, anyone else rates just as high as everyone else. The children Alex plays with are not people, so much as props. Alex's excitement over classmates is virtually indistinguishable from his excitement over pets. His interactions...virtually the same. He's getting better at this, and we're working on it, but right now. People are all incredibly interesting, but Alex hasn't been able to break through the mold in which he views them...except for a precious few.


"(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)"

Ben is an inquisitive, joyful little boy. He's four years old, and has all the energy and curiosity that implies. He climbs, crawls, runs and plays...he finds all sorts of things to investigate. He finds all sorts of pint-sized problems to solve. And he does so with fervor. He explores his body, his surroundings and his limits. He explores other people, all sorts of things, places and just about anything he can find. He doesn't have a flashing light that goes off in his mind saying, "This is a bad idea." He simply explores, pressing against and beyond any limits that are set.

Doesn't seem particularly uncommon for a four year old, huh? There's just one little difference; one that stands out if you're familiar with childhood development. Ben does NOT share his discoveries with anyone. Why, I'm not sure, but he doesn't. He could find something he considers to be "the coolest thing in the world" and he won't share it with anyone. Not that he won't hand it over upon request (though that can be difficult too), but more that he won't draw anyone else's attention to it. There's no "Mommy, look!" from Ben. He doesn't bring me his discoveries; he doesn't hide them in his pockets; he doesn't ooh and aah over them for anyone. He simply enjoys them on his own.

Now, the clincher here is that he also doesn't readily redirect his own attention when someone else tries to share their interests/discoveries with him. I can't point to the squirrels that play on our porch and have Ben actually look. I can move his head, gently but physically, and then enjoy that moment of discovery we can share, but this is fleeting and often a complete failure. I can dangle something in front of his face until he notices, or cue and cue and cue him, but in the end the struggle to attend is paramount. Sometimes shared attention occurs, most often it doesn't.

This makes education very difficult. In order to get something to "sink in," you first have to obtain shared attention. You have to make sure the other person's focus is on the same thing yours is, or you're going to have a disjointed conversation...if you converse at all.

Imagine for a moment... You're looking at a serene picture of a waterfall. It's peaceful and inviting. The water is cascading down into a pool below, and the painting is full of colorful fauna that makes you want to step right inside. Now, from somewhere around you, "That's a circle. It's a red circle. The circle is inside a square. The square is blue. Remember circle, square, red, blue." Confusion, disorientation, and a big "Huh?" follows these seemingly inappropriate statements. Now, at this point, most people would turn to look at the speaker and find what the heck they're talking about. "Ah," you think, "they're talking about the abstract sculpture behind you!" Then, it makes sense. A person who doesn't share their interests with others does not do that, they don't obtain shared attention to make sense out of confusing, conflicting information. At least, they do not do so readily and instinctually. Thus, the world makes that much less sense to them.


"(d) lack of social or emotional reciprocity. "

Okay, this is where outside resources comes in handy. The dictionary definition of reciprocity is "A mutual or cooperative interchange of favors or privileges, especially the exchange of rights or privileges of trade between nations." (second dictionary, #2)

However, Wikipedia has this to tell us (when brought into proper context):

In social psychology, reciprocity refers to in-kind positive or negative responses of individuals towards the actions of others. Thus positively interpreted actions elicit positive responses and vice versa. Positive reciprocal actions differ from altruistic actions as they only follow from other positive actions and they differ from social gift giving in
that they are not actions taken with the hope or expectation of future positive responses.

Breaking this down, I think this is refering to the tendency for autistic individuals, as depicted my children, to react to social stimulus in unpredictable ways. Most recently, a favorite therapist gave Willy several gifts for his birthday. These gifts included a basket of apples, a package of socks, and brand new shoes -- the kind that are too expensive for us to afford for our kids -- and a heart-warming card. These were very nice gifts that, upon reflection, Willy liked very much. However, Willy was interested in 1) opening his gifts as quickly as possible, 2) going back to his video which was a new excitement for him. Appropriate reciprocal behavior would have been to take time to open them nicely, enjoy and appreciate them, and thank the giver. The appreciation and thanks didn't come until later...after the favored therapist was gone. But, again, I'm neither psychologist nor sociologist...just a lay parent who's learned a lot about autism through immersion.

It's complicated, confusing and I'm just getting started. This is only ONE aspect of autism. If you have questions, please ask. If you have comments, please leave them. If you have anecdotes of your own, please share them.

What is Autism: Part 2, Communication will be posted tomorrow.

6 Comments:

At 12/22/2006 12:00 PM, Blogger mcewen said...

DSM IV - didn't even know it existed a few years back. If you read all of it [as opposed to just the pieces relevant to autism] it makes a fascinating read - I had no idea there was so much out there. Seasonal Greetings

 
At 12/23/2006 4:58 AM, Blogger Stephanie said...

I haven't gotten the chance to read all of it, yet; but I do know there's a lot of disorders out there. Or, in the language of neurodiversity, a lot of human differences.

It's difficult to distinguish between those who feel disordered and those who feel different from the outside, and I don't think most psychologists make enough of an effort to do that.

 
At 12/23/2006 11:20 AM, Blogger historymike said...

As the parent of a child diagnosed with Asperger's syndrome, I can relate to your struggles, Steph.

Thanks for helping educate the world.

 
At 12/23/2006 11:53 AM, Blogger Stephanie said...

Thank you for stopping by, Historymike. I'm glad people are reading these posts and I hope it helps somebody along the way.

 
At 12/30/2006 7:14 PM, Blogger MileMasterSarah said...

This is great, and I have enjoyed reading about your boys and how autism is in each of them. Your discussion about Willy and his "friends" reminds me so much of my son. Sandis thinks EVERYONE is his friend one day, and the next is sad because he realizes that none of the little boys at school actually are his friends (they probably were mean to him that day, much too common for my taste). sandis makes his best friends with the para-educators and special ed coordinators at the school. He loves them and would be happy with three adults and just him, if he had the choice.

 
At 12/31/2006 4:24 AM, Blogger Stephanie said...

Welcome, Sarah!

It's great to see a new face/name.
:-)

Both Alex and Willy truly enjoy their adult friends as the safest and easiest to get along with, though both have had their share of special young people in their lives who've found the means to make incredible accomodations. Too bad such phenomenon are rare and short-lived.

 

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